My son is 18 and has primary central nervous system lymphoma and has one large tumour in his left hemisphere. He is a transplant recipient of a kidney at age 2 so the PCNSL is a direct result of long term immunosuppression. he is about to have his 1st scan after 3 doses of chemo to see is its working. we have been told that if its not working we don't have any more options for treatment and will be looking at end of life palliative care....very nervous to get the scan done and results. ... View more

Julie You are a TOWER OF STRENGTH!!! Stay strong. Karen ... View more

Hello Russ, I think it’s best we talk, preferably face to face but if not on the phone, rather than email because our situations are so rare & so complex. There are so many factors that might be significant, what part of the brain did the tumour grow, how early it was detected, the list goes on. We need to filter out those significant things. Your partner is the third person I have heard of in Australia who currently has or is dealing with the effects of CNS lymphoma & it’s treatment. CNS lymphoma is extemely rare, much more uncommon than other brain tumours. It is not the brain cells that become cancerous but lymph cells that lodge in the brain. Where do you live in Sydney ? I live in Marrickville. I am happy to share my experienced, how it affected me & my family. One good thing about a primary CNS lymphoma is that it is extremely unlikely to cross the ‘blood\brain barrier’ so will be confined to the central nervous system fluid. There are similarities between our situations, the first things that spring to mind are 1. Firstly I was diagnosed in my thirties, I was 37 2. I was living in Canada & all my family were in Australia Some differences: 1. I did not have any issues with fits. I guess this might depend on where in the brain the tumour grew ?? 2. I did not have any children when I became sick but I had only been married for 6 months Sooo.. send me a message & call me up. I am free to meet up on weekdays. My daughter is now 5 & at school I am caring for my son who is 2 and a half, So I have time to meet up although I have to work around school pickups & afternoon naps ! In answer to your questions about the effects of the tumour & it’s treatment on myself: 1. I had primary CNS lymphoma. It's been 10 years since my last treatment so it is highly unlikely the cancer will grow again. 2. I have both physical & cognitive deficits. 3. I am an engineer & I can no longer do that work. Having said that I am more engaged with my children than I could have been if I had continued being an engineer Soooo, I have to go now, it’s the arsenic hour. I hope we can meet up & talk bye for now, Richard ... View more